May 03, 2006

Living With Lymphedema

I was diagnosed with lymphedema about 3 months after my lumpectomy. Leaning against a ballet barre I noticed an indentation in my arm.

My worst nightmare was the emergency room trip. When my cancer returned, I fell and broke my leg. As we called 911, I yelled to my husband, “Get my bandages!” When I woke up in the hospital bed, I saw my husband had written on my arm “No BP – No needle sticks.”

Lymphedema impacts my life every day --

I wear a compression sleeve. Measured for my arm, it goes from my wrist to my shoulder. I need 4 sleeves a year. When my hand swells I need a compression glove. I am left-handed, and my left arm is affected. I have trouble holding a pen and typing. I vacuum with my other hand. I carry only 5 pounds. I never have my blood pressure taken or a needle stick in that hand or arm.

At night, and up to 23 hours a day, I wrap layers of foam bandaging from my fingertips to my shoulder. My arm looks like a giant club! I don’t sleep well while bandaged and take a sleeping pill.

I see a physical therapist specializing in manual lymphatic drainage. I go once a day, three to five days a week, for a number of weeks. It takes at least 6 visits to get my arm under control.

I learned self-massage and special exercises. I wear gloves to garden. When cooking I wear surgical gloves. I bandage if I fly on an airplane. It’s uncomfortable to bend my elbow, so I don’t cross my arms over my chest, or put my hands on my hips. I use a telephone headset because it hurts to hold the phone in my hand. I had my wedding and engagement rings re-sized because my fingers had swollen from living with lymphedema since 1999. For several years I was even in a lymphedema support group.

I am a very compliant patient and my affected arm is not too much larger than my good arm. Otherwise it could swell to the size of my thigh.

Until my cancer spread throughout my body, managing lymphedema was a daily, unpleasant reminder of cancer. Lymphedema is a permanent part of my life and I wrestle with it from first thing in the morning, all day, and every night.

1 comment:

  1. Hi Jill, I just wanted to thank you from the bottom of my heart for writing this blog. My best friend was diagnosed in January with stage IV metastatic breast cancer. She had just turned 29 when she received her diagnosis. She has twin girls that are 4 and a half and a 3 yr old son who has some special needs. She also has an angel daughter who passed away at 3 days old in 2007. When she received her diagnosis she was devastated. She was told she might have only 5 yrs to live but that they couldn't be sure, it could be longer. I immediately started searching the Internet for someone like you who could prove to us that it is possible to live many yrs with mets and have an active enjoyable life during that time. I was terrified that even if she manage to stay alive for longer than 5 yrs her yrs would be spent sick, miserable, and in a hospital bed. When I found your blog I was immediately filled with hope. I went all the way back to your very first blog post and read every single entry you have ever posted. In a few weeks I went on your journey of the past few weeks. At times I cried, but for the most part I found an unbelievable sense of hope. You gave me and my dear friend an understanding of what life can be like-the good, the bad, and even the awful-at a time when we needed it the very most. I can never say enough about how grateful I am to you for sharing your story with us. Thank you from the very bottom of my heart and please know that I share your story as often as I can and I pray for you always.